If you have an ITP Story that you would like to share please email This email address is being protected from spambots. You need JavaScript enabled to view it.. We can share on this website and in our quartily journal The Platelet.

My ITP Story by: Ella Sophia Ellis

We can all have a habit of believing we’re invincible in some way or another. In particularly in adolescence, as a young fiery spirited child, full of unscrupulous energy and an innocent sense of the world, I felt this way. Growing up, I lived a pretty cush life, awesome parents, incredible family, great friends and a wealth of opportunities. But at the age of 8, my rollercoaster journey with ITP began, of which I am sharing with you today.  I hope this piece, may provide some candid knowledge of life with ITP, and particularly through the perspective of an adolescent but also offer conjure an optimistic stance on ITP, for everyone to take from.

I vividly remember, most memories as a pre-teen living with ITP. I distinctly can recall, the initial adrenalin rush, of being taken to hospital for the very first time. Directly oppositional to my parents panic stricken faces, contrasted my excitement to have time of school, lay in bed all day watching day-time TV and eat an abundance of snacks, whilst being prodded and poked by perplexed doctors. However, my enthusiasm for a relaxed bed-bound hospital life, quickly dissolved, alongside my rapidly declining platelet count.   At the age of eight years old, I began various courses of treatment, and my extensive bleeding episodes became more frequent. The dwindling moral of doctors, that as a young person I would ‘grow out of ITP’, came more infused with every unexpected hospital visit. By the tender age of 11, I had experienced possibly every symptom ITP, could hurdle at my frail body. Severe 6-hour nosebleeds, purple/red petechiae, continuous gum bleeds and mouth lacerations, and the best part- the beginning of my (Carrie horror-film like) menstrual cycle- the joy! Not to mention, the questionable extreme- bruises, that brought frequent, uncomfortable, conversations with schoolteachers, friends-parents, that left me floundering for an articulation of a disease, I did not even really understand myself. Meanwhile, I watched my parents emotionally struggle with the heart ache of being worried for their child. This ultimately hurt the most. I believe when you go through the motions of illness, even as small child, the power of your parents’ (loved ones) feelings, is deeply affectual. I tried my upmost, to keep upbeat, happy-go-lucky Ella, that had always been, previous to ITP, but my transfer to Birmingham Children’s Hospital after my local hospital became too puzzled by my condition, really hit a core.

Read more ...

A sixty-five year acquaintance with ITP

It began one March evening in 1955. At about 8.00 p.m. petechiae appeared on my arms and legs, followed by bruises, blood blisters on my tongue, and passing blood in urine. Mum set off on the long walk to the phone box to call for medical help while a neighbour supervised me and my younger sister. Our G.P. visited a few hours later, took one look and pronounced that I had Purpura. It was the first time I heard the term, but it seemed apt as by then purple seemed my dominant colour.

The next morning friends walking to school were surprised to see me entering an ambulance, as was Dad as he turned the corner returning from his night shift in the steelworks. So began over four weeks in the Children’s Hospital being treated with cortisone.

I have vivid memories of the enforced bed rest; of watching the four occasions a syringe needle was forced  into the marrow of my hip and the discomfort as the contents were withdrawn; daily blood tests and the pricking of thumbs and earlobes to absorb blood onto a circular filter paper for testing; and the senior doctors pinching the bruise free areas of my torso so that their juniors and students could watch the new bruising appear. The hospital was not child friendly by today’s standards. I was allowed to sit up to eat but otherwise was expected to lie down in bed which was difficult for an eleven year old who did not feel especially ill. Parents ‘ visiting was 6.00 to 6.30 p.m. and strictly enforced. Doors opened at six and there was a two-minute warning bell for parents to say goodbye before visiting ended.

Weeks later I was at home, overweight, and moonfaced as a result of the cortisone treatment that had been administered, friends needing to look twice before recognising me.

Some doctor had told my parents that I should not participate in sport because of the danger of a recurrence of the problem. Fortunately our family doctor had the view that I should do whatever I chose to do and enjoy my childhood.

In March the following year ITP returned and led to a hospital stay of five days before my blood returned to normal. Two days later I was running in the school cross country race for my age group.

In the following years I ran middle distance track races, marathons, then some ultra marathons (55-57 miles), instructed at skiing, and canoeing, and dabbled at sailing, windsurfing, and waterskiing.

Read more ...

My ITP Story.

By Janet Millard

My name is Janet Millard.  I live in West Sussex and at the time I became ill I was 63 years old. My story starts in July 2017. I had been for a routine blood test at the GP Surgery on a Thursday in early July. The next day I woke to find a strange rash across my chest, but as it was a very hot day, I put it down to the heat.  As the day went on the rash progressed to other parts of my body, including legs and arms.  Baffled but not unduly alarmed, I carried on in on as usual until early evening.  On using the loo, I noticed I was losing blood, quickly followed by coughing up some blood.  Now the rash had progressed to round my neck and I was starting to feel unwell.  My family took me to the Accident and Emergency Department, where they diagnosed ITP.  My platelet count was down to 8. When the doctors looked at the blood test, I had done the day before, the platelets were in normal range, so they had literally dropped over night.

I spent the next week in hospital as my platelets dropped to zero on the Saturday night. I had a severe nosebleed that lasted for twelve hours and ended up being anaemic.  The steroid treatment I had been put on wasn’t working, for three days my platelet count refused to rise. I had three platelet transfusions, but my immune system kicked them out as fast as they went in, the doctors said I was like a leaky sieve.  By Wednesday my platelet count had struggled to 4, so It was decided to try a drug called intravenous immunoglobulins. Thankfully this worked, my platelets started to rise and by the following weekend rose to 26, the bleeding had stopped, and I was allowed home.

I had regular checkups at the haematology department, and the steroids finally kicked in and my platelets were now in normal range. After three months the steroids were stopped, and the platelets remained in normal range for four months.  I woke one morning to find bruising and a rash appearing, but thankfully this time no bleeding. The platelet count was first zero, then 17 followed by 26 before I had any treatment.  The platelets had started to rise on their own accord, so the doctors decided to give no treatment but monitor me closely. The platelets kept rising slowly and five months later in June 2018, they had reached 114.

A week later after the platelets had reached 114, I woke one morning to find bruising and a rash, I also felt very unwell, but still not bleeding. As it was a weekend I waited to the following Monday as I knew there was a haematology clinic at the hospital on that day.  When they checked my platelets, they were down to zero again. I was treated with a high dose of steroids and three months later these were stopped when the platelets were in a safe range, I was put on Mycophenolate mofetil, an anti-rejection drug, 500mg a day.  I have now been well for the past eighteen months, the Mycophenolate mofetil is still working well and the platelets are in normal range.

The latest news is that the doctors are now considering weaning me off the Mycophenolate mofetil to see if the ITP returns, or I remain stable.  They hope the immune system has been ‘tricked’ into not rejecting my platelets, but time will tell, and they can never say that the ITP won’t return.

Janet Millard, Crawley West Sussex.

Having ITP has saved my life.

By Pam Brookes

I know, it sounds ridiculous doesn’t it, but it’s true!

I was almost 57 and according to my husband, I was a few years into my menopause when I was diagnosed with ITP in May 2017. Sorry chaps, it’s one of those stories but please stick with it.

I had been to the doctors earlier in the year because I just felt so tired. I was crying at nothing and was exhausted all the time. My Doctor started a series of tests which all came back normal, reassuring but frustrating. Then I had a blood test as part of a starved glucose test.  A Doctor phoned me later that day and told me that my platelets were at 7, and I must go to A&E, they were expecting me and to take an overnight bag. At the hospital the Doctor tried to explain what 7 meant, told me that I didn’t need to stay in and made me an appointment for the Haematology clinic.  

Three day later, I was told I had ITP. What? Never heard of it. We had a long chat and I was given some reading material. It sort of made sense, the fatigue, the exhaustion but I only had one bruise, although it was odd to bruise from carrying a shopping bag with a loaf in it.

I started where everyone starts, steroids, 70 mg. I piled on so much weight but at least they were working. However, my platelets kept crashing down into single figures every time the dosage was reduced. By the November it was decided that I would start Romiplostim. Because of my weight, I had 5 injections every Friday. It was less painful to give myself 5 injections rather than having them all in one syringe.  The injections worked initially but then I dropped back into single figures. Eltrombopag next. Again, it worked initially but then back down to 7 so back to the injections. I did have the odd week over 100 but mostly I was below 30.

It was now June 18 and I was bouncing along in single figures. That was when the operation to remove my spleen was first mentioned as the drugs just weren’t getting my numbers up to anything near a safe level.

Read more ...

I Have ITP- but it doesn’t Have Me.

By Dave Farrow

I developed ITP and neutropenia (loss of some white cells) way back in 1993.

Over the years I’ve had most treatments available including a splenectomy which did not work. Twenty-seven years later I still have the two conditions lurking in the background somewhere but thanks to treatment with various doses of Mycophenolate and a caring Haematologist that I can talk to, my counts have remained stable for several years now.

However, I have had to help myself too. In the early days I was stressed out and often looking for new bruises that were not always there. The large doses of prescribed steroids were driving me crazy and my loss of white cells made me vulnerable to infections. I knew that I had to somehow take charge and develop some coping strategies. I thought It time I shared some of these with others.

I was not feeling well and had been in and out of hospital during my first year, but I thought it important to learn all I could about the Immune system and the enemy within that was sometimes attacking my platelets. The immune system is complicated, so I tried to keep to the basics at first. I sought Information from books and explanations from health professionals. I never really met another person who had ITP in those days. The ITP support organisation didn’t exist in 1993. I was one of its early members. Later it became a great source of information and of course much more is known about ITP nowadays.

At first, I was stressed out by it all but after a while I thought it best to become a patient, patient! As all patients know we spend a lot of time waiting to see Doctors and others. I go prepared with something good to read. I get to know staff and other patients. I became patient about results too. I learned not to expect rapid, long lasting, positive results from treatments.

Read more ...